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Psalm 23

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Posts posted by Psalm 23

  1. Thank you Raisin. It can unfortunately be a long road trying to get answers and help. It really is all about seeking out the experts in the field. It wasn't until I finally realized who I needed to see that many of the pieces began to fall into place. Except for this odd antibody that turned up I have finally been given diagnoses that make sense and medications that help. I hope you make progress on your journey. I'm so sorry about your abdominal pain. That definitely needs follow up.

    Yes. God bless us all.

    Janet

  2. Hi Raisin,

    I'm sorry you are having to deal with this antibody issue as well. I tested positive for the calcium channel n-type antibody this past spring. I had previously tested negative so it came as a complete surprise to my Neuro and myself. Because of the cancer connection as was pointed out by Natops at the very least you should be retested at a later date. I was advised to have a CT of the chest, abdomen and pelvis as well as a mammogram and gyn exam. I am also scheduled for a repeat paraneoplastic panal next month. I was told by my hematologist/oncologist that if there was no cancer detected after 2 years then the likelihood of it developing was very slim. My Neuro said the presence of this antibody was unexpected and is of unclear significance and that this antibody can be a marker of an autoimmune process or sometimes can be a marker that there is a small cancer hiding out somewhere. Many unknowns here. I'm glad you have follow up.

    Janet

  3. I have a fluttery sound that occurs in both ears when I have been standing for too long. It disappears when I sit or lay down. It seems to be more problematic on worse dysautonomia days. Other than getting off my feet I haven't found anything else that helps me.

    My mother has a problem with episodes of ringing/buzzing in her ears. I took her to an allergist and he suggested it was allergy related and recommended she take an antihistamine as needed which seems to have helped her.

    I hope you find some relief.

    Janet

  4. Issie I hadn't heard before that some find a worsening of their POTS symptoms with turmeric. Do you know where Dr. G. stands on turmeric ? I never asked him. It was recommended to me by my Rheumatologist and one of the Mayo docs in consultative medicine who I'm sure didn't know much about POTS.

    Dave I have found quite recently that a gluten free diet has been helpful for my GI symptoms as well as general pain reduction.

    I guess in the end it really is trial and error with everything.

    Janet

  5. I started taking Alpha Lipoic Acid 600mg daily about 3 months ago and began to notice a significant reduction in pain after about week 5. ALA can actually be taken up to 600mg twice daily but as much as I would like even greater pain reduction if that is at all possible I'm fearful of a potential vasodilation side effect. Issie had posted that as a potential side effect a while back so I have been watchful of it. Thank you issie.

    Other dietary supplements I take;

    Tumeric 1,160mg ( Mayo recommended it but emphasized it had to contain black pepper )

    Omega-3 & DHA 2,126mg

    Vitamin C 1000mg

    Vitamin E 400 I.U.

    Vitamin D-3 2500 I.U.

    B Complex

    I am also watchful of trying to maintain an anti inflammatory diet. Wishing you success.

    Janet

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